Blog: Research

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Neurological Patient Experience survey (England)

20 December 2018
NA, neurological, Neurological Alliance, survey, patient experience, England

In 2016 the Neurological Alliance ran a patient experience survey, gathering over 7000 responses, from patients with neurological conditions living in England (see previous blog post). The findings were used to campaign for better services and support for people with neurological conditions.

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Are you in Lincolnshire? Can you help?

11 January 2018

Do you live in Lincolnshire? Could you help shape the future provision of medical care for neurological conditions like narcolepsy in your area?

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Disability Rights UK survey on PIP problems

24 March 2017
Disability Rights UK, PIP, government, survey

Narcolepsy UK would like you to help us by completing this survey from Disability Rights UK. Disability Rights UK have been asked by the MPs on the House of Commons Work and Pensions Work and Pensions Select Committee to help in its investigation of problems with Personal Independence Payment (PIP).

The MPs are keen to receive evidence of problems disabled people have experienced with the PIP claim, assessment and appeals process.

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European Patient Advisory Group - new clinical trial

17 March 2017
European Patient Advisory Group, clinical trial, Flamel, Avadel, sodium oxybate

This year we have a great story to kick-off European Narcolepsy Day!

Narcolepsy UK have facilitated a meeting to initiate the creation of a European Patient Advisory Group to work closely with pharmaceutical companies on research and clinical trials of new medicines for Narcolepsy.

Even collectively, we would struggle to fund research but this way, we hope that we can provide our knowledge and assistance to make things happen faster.

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No evidence for a link between Fluenz Tetra and narcolepsy, says MHRA

17 November 2016

MHRA believes that Fluenz Tetra and other currently-used influenza vaccines are not a cause of narcolepsy.

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Narcolepsy UK welcomes second neurological patient experience survey

7 July 2016
NA, neurological, Neurological Alliance, survey, patient experience, England

The Neurological Alliance has launched its second neurological patient experience survey. The survey aims to collect vital information about the experiences of care received by people affected by neurological conditions and help us to understand how much progress has been made in improving neurological services.

The survey is open until 30 September 2016 and the Alliance welcomes responses from anyone with a neurological condition living in England.

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Pitolisant / Wakix® Update

Matt O'Neill
23 May 2016
Pitolisant, Wakix, orphan drug

I thought it would be useful to provide you all with an update on where progress with patient access has reached for the new, first-in- class, medicine known as Wakix® or Pitolisant. This oral medicine acts on histamine H3 receptors in the brain, leading to the release of increased histamine, thereby enhancing wakefulness and alertness.

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Research project about children with narcolepsy needs volunteers

12 May 2016

The Paediatric Narcolepsy Project research programme is investigating school performance and well-being in children with narcolepsy aged 8-16 years old. The project has been set up by The University of Leeds and has received ethical approval from the School of Psychology's Research Ethics Committee (ref: 15-0198, date: 03.08.15). The research is taking place in the United Kingdom and in the Republic of Ireland. They are still looking for families across the UK and Republic of Ireland to take part in this research.

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